VWM affects mostly children and there is no treatment or cure currently available. It destroys myelin (the central nervous systems white matter) which is the insulator of the nerve fibres. In doing so, it permanently affects transmission of brain signals to the rest of the body.

Chloe is now seven and confined to a wheelchair, as this monster of a disease has already robbed her of her ability to walk. It will then paralyse her little body to the point that she won’t be able to hold her head up, talk, see, hear or eat. She will experience a lot of pain and suffering and die at a very early age, if the cure is not found in time.

There is HOPE for Chloe and over one hundred children like her worldwide. Doctors are working on a cure with promising research taking place to stop the disease in its tracks. The problem however, is funding. With only seven cases in Australia and 172 worldwide, pharmaceutical companies don’t see it as commercially viable and it is therefore left up to the families affected to raise the funds to save our children.